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Re: IV Rocephin and MRI

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An MRI shows the matter of the brain, while a SPECT shows the workings of

it. There are numerous articles about how an MRI can show MS when it is in

actuallity Lyme. Even Lyme can show oggliclonal bands, the very things they

look for in MS.

http://www.geocities.com/HotSprings/Oasis/6455/lyme-links.html This site

has alot of info about Lyme-MS

http://www.cassia.org/ if you look for 'Blieweiss' article it will bring

up a very good one about how Lyme can look and act like MS

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Hi Charlene,

Do you know how long you have had lyme disease? We

think that I've had it for about 7 1/2 yrs., and when

I first found out that I had Lyme it was because I

went to a Neurologist because I feared that I had MS.

I had a MRI and it showed a white spot on the right

side of my brain. Then they did a spinal tap to see if

it was MS or Lyme disease. My spinal fluid was

positive for lyme and neg. for MS. When they put me

on IV Rocephen for the first time, I didnt even herx

until week 3 and then they stopped the IV at week 4

and I was left in a worse condition. Then they put me

on IV again for 4 weeks and I finally had some

improvements. From what I've learned it takes a long

time to get better and the longer you have had it, the

longer it takes. Its now a little over a year later &

I'm back on IV Rocephen for 8 weeks along with oral

Zithromax every other day. Take care, Kim S.

--- Txlady42@... wrote:

> Have been on IV Rocephin almost 2 weeks with no

> noticed

> change in my mental fog. I'm suppose to be on it for

> 30

> days. I was just wondering what type of experiences

> others had on Rocephin. Also having an MRI of the

> brain

> Friday( my pcp thinks it's MS even though positive

> western blot and bull's eye rash) Thank goodness for

> my

> LLMD. Did anyone have an MRI and did it show

> anything?

> I know that a spect scan is suppose to be better.

> Any

> and all help appreciated.

> Charlene

__________________________________________________

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Charlene,

I have had a few MRI's of the brain, the first showed one lesion, the

next two showed three lesions, I forget in what part of the brain. The

radiologist's diagnosis of reading stated MS or Late Stage Lyme disease.

I have also had a PET scan that was abnormal, dx on that one was early

Alzheimer's or Late stage Lyme disease. Both of these doctors had access to

my records and knew I was being treated for LD.

I have heard stories of Lyme patients who had multiple lesions on their

brains too, but after treatment with IV meds for a longer period of time

than 30 days, their next brain MRI's showed marked improvement.

Just a hint if you are new at the MRI stuff, I always close my eyes and

keep them closed before entering the tube, I don't open them till I come out

and I found it really helps with any claustrophobic anxiety.

Good luck,

Marta

----- Original Message -----

From: <Txlady42@...>

> Have been on IV Rocephin almost 2 weeks with no noticed

> change in my mental fog. I'm suppose to be on it for 30

> days. I was just wondering what type of experiences

> others had on Rocephin. Also having an MRI of the brain

> Friday( my pcp thinks it's MS even though positive

> western blot and bull's eye rash) Thank goodness for my

> LLMD. Did anyone have an MRI and did it show anything?

> I know that a spect scan is suppose to be better. Any

> and all help appreciated.

> Charlene

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I had two mri's over the past 2 years and both showed nothing. the spec

scan is better for a lyme patient. also EEG. My EEG showed a seizure

disorder, so my neurologist didn't order a spec. but that would have been

the next step. although the MRI is the first test usually given to rule out

MS.

roe

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Hi Charlene,

I had my first major breakthrough and most significant improvement after a

28-day course of IV Rocephin. That's all my insurance would allow. (Regained my

cognitive abilities, and was able to read and write again for the first time in

6 months.)

Prior to that I had had an MRI, which revealed some very interesting, and at the

time, disturbing info about the " goings on " in my brain. That was in 1995, and

all that stuff (MRI) was Greek to me at the time and very confusing. The MRI is

an important diagnostic tool for your doctor.

I wish you a lot of improvement by the end of your treatment on Rocephin!

Love ya, Rose in Texas

Date: Tue, 26 Jun 2001 04:16:41 -0000

From: Txlady42@...

Subject: IV Rocephin and MRI

Have been on IV Rocephin almost 2 weeks with no

noticed

change in my mental fog. I'm suppose to be on it

for 30

days. I was just wondering what type of

experiences

others had on Rocephin. Also having an MRI of the

brain

Friday( my pcp thinks it's MS even though

positive

western blot and bull's eye rash) Thank goodness

for my

LLMD. Did anyone have an MRI and did it show

anything?

I know that a spect scan is suppose to be better.

Any

and all help appreciated.

Charlene

T.O.I.L. for Lyme!

T=Teach tolerance; O=Overcome ignorance; I=Initiate insurance reform; L=Labor

for Lyme literacy

*My Lyme Disease Story & Website*

http://www.angelfire.com/tx3/RoseWriter

---------------------------------

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Dear Charlene,

I was on IV Rocephin for several months.

I can't recall how much it helped for my brain fog & disorientation, except

that both did improve somewhat.

What I remember distinctly, like a total miracle, is that by day #4 or so,

ALL my fibro aches & pains, all my burning skin, pins & needles sensations,

seizures, and Restless Legs symptoms completely disappeared. Same with the

chills & sweats.

What it didn't help was my hearing loss & eyeball pain, which prevented me

from doing any significant amount of reading. Later, IV Claforan helped with

these 2 symptoms.

The Rocephin gave me my muscles back. Without it, I'm certain that I'd have

been in a wheelchair.

The downside to Rocephin is that if you stay on it for extended time periods,

it can affect your gallbladder & cause stones, sludge & painful attacks, so

please discuss with your doctor methods to reduce this risk. Of course, if

you've already had your gallbladder removed, that risk is eliminated.

Please never forget to use aseptic techniques for the IV stuff, keeping the

site & equipment at clean as possible & always wash your hands & use alcohol

wipes at the site to decrease the chance of infection.

Good luck to you with your treatment.

Hugs, a in NJ

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In a message dated 6/25/01 11:28:16 PM Central Daylight Time,

Txlady42@... writes:

> Have been on IV Rocephin almost 2 weeks with no noticed

> change in my mental fog. I'm suppose to be on it for 30

> days.

Was on 6 weeks once with no change. Was on 6 months last year and didn't

notice any difference til I hit 10-12 weeks. By 4 months I had more mental

clarity than I had in 7 years.

Hang in there on as long as you can cause 30 days may simply not be

enough...it certainly wasn't in my case.

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